Bedside Manner: Conversations With Patients About Death

This is TALK OF THE NATION. I'm Neal Conan, in Washington. All of us prefer to be told the truth - at least, we say we do - even when the diagnosis is terminal. And doctors believe they have an obligation to deliver bad news except that often, they don't. In a survey of nearly 2,000 physicians by the Mongan Institute for Health Policy at Massachusetts General Hospital, a majority said they believe they should never lie to a patient and yet more than half delivered a rosier prognosis than warranted, and 10 percent outright lied.

Telling somebody they're about to die isn't easy, of course, and it's no easier having what's sometimes called "the conversation" with their loved ones. Doctors, is there one of these conversations that's stayed with you? Tell us about a talk that helped shape how you talk with your patients and their families about death - 800-989-8255; email us, talk@npr.org. You can also join the conversation on our website. Go to npr.org; click on TALK OF THE NATION.

Later in the program, we'll hear a story about a celebrated lost city, hidden for centuries by a rainforest and uncovered by high-tech exploration. But first, Dr. Pauline Chen joins us. She writes the "Doctor and Patient" column for the New York Times. She's also a practicing surgeon, and the author of "Final Exam: A Surgeon's Reflections on Mortality." She on the line with us from Marseilles, France. And Dr. Chen, thanks very much for taking the time out to join us.

DR. PAULINE CHEN: Well thank you for having me. It's an honor to be on your show.

CONAN: Well, thank you for that. There is clearly one of these conversations that has stayed with you.

CHEN: Yes, there are actually several, there are several. But I recently wrote about one. It was a patient who was waiting for a liver transplant - a young man, and he was incredibly ill. And every day, his parents would come to the intensive care unit and ask me when their son would get a liver transplant.

And I remember, there was a point where I really did not think he would make it, that a liver would not become available for him. And I remember being quite honest with them. But it was very, very difficult. And that conversation came back to me many times because, you know, he eventually did get a transplant and survived, and on the anniversary of his death - or not his death, excuse me; of his transplant...

(LAUGHTER)

CONAN: Of his rebirth.

CHEN: Of his rebirth, exactly, of his transplant, they would come to the hospital, and they would bring chocolates for everybody. And every time they came to me to give me my box of See's chocolate, there was this moment of hesitation. And I remember - I mean, for years I thought, they remember that conversation; and they're upset still - or it would just come back to me. And one day, I finally asked them about it, and it was a very illuminating discussion and experience for me.

CONAN: And what did they say when you asked them about it?

CHEN: You know, they said, well, what if you didn't tell us? And you know, it was affirming, at the moment. But I have to say, for many years, I wondered if I had done the right thing.

CONAN: What do you think now?

CHEN: (Laughing) I think I did, but I think it's very difficult. And I think it's very difficult for all doctors, and I think it's very difficult for patients. So although in that instance, I do feel I did the right thing - and the family did - there are many more conversations, in my experience, I think in any caregiver's - you know, health care provider's experience, of moments where you aren't really sure whether you did the right thing, or you aren't really sure that the conversation you had was what you think it might have been; or where it was just so difficult that maybe you weren't 100 percent as blunt as you might have had to have been.

I think it's a very difficult area. But I think it's a very exciting area, too, because I think there have been a lot of changes in health care in the last five years; a lot of studies, a lot of initiatives, things that have - that are changing how we view this topic.

CONAN: Such as?

CHEN: Such as, for instance, even the word terminal or dying. You know, doctors - I mean, in health care, we are notoriously poor at predicting when a patient can die. You know, being able to say, you're going to die in three months, or in two weeks - it's very rare that you can be that accurate.

But on top of that, you know, for a long time, people thought that it was a decision between going forward with aggressive care - whether that was chemotherapy or, you know, a ventilator, a breathing machine or whatever - versus no care at all, which meant, to patients, giving up or choosing death; or going to hospice was considered the alternative.

But what's been interesting in the last couple of years, there have been studies that have shown that people who go to hospice with metastatic cancer, incurable cancers, they actually - they have better outcomes than if they stayed in, quote-unquote, "aggressive therapy." So that sort of makes you wonder - I mean, the whole...

CONAN: I have to interrupt there. You say better outcomes. Do you mean in terms of quality of life, or length of life - or both?

CHEN: Both, both. And so it makes you think about, what do we really mean when we say, well, we're going to withdraw this care, and we're going to institute comfort care measures; when in fact, comfort care measures - in a few studies - have been shown to actually improve patient outcomes, in terms of length of life.

I mean, it's a very - we're in a new gray zone, I think, in terms of how we deal with end-of-life care, how we deal with terminal - these discussions, which I think is really - it's sort of bringing together all of the social, cultural and medical advances all into one moment, in the doctor-patient relationship; and sort of putting it in a very different light.

CONAN: Is there ever any concern that if you're going to tell a patient that pretty much you're out of options and that the end is nigh - is going to cause them to give up?

CHEN: Well, you know, it's interesting because there have been studies about patients and how they feel, and what they want to hear. And, you know, there have been studies that have shown - like, there was a study fairly recently that looked at over 100 patients with incurable cancer. And they asked these patients, well, what do you want to be told?

And almost all of them said - you know - we want the truth, we want the truth; we want it - you know, about our prognosis, about our treatment options. But then the researchers asked, well, what do you define as hope-giving, and what do you define as not so hopeful, you know, in what a doctor tells you?

And in terms of hope, they wanted to know, you know, they wanted to feel that they were being given options for the most up-to-date treatment, and that their doctor knew everything about their case, and the doctor said that their pain would be controlled. But in terms of no hope - and here again, this is interesting because what you and I may define as hope is sort of different for somebody who has an incurable cancer diagnosis.

For those patients, what they thought could devastate their hope was not necessarily that there, you know, there was, you know, no curative therapy available; but it was that the doctor appeared nervous or uncomfortable talking about their prognosis, that the doctor gave their prognosis to their family members first rather than to them, and that the doctor used euphemisms. Instead of saying, "you're dying," saying, "well, you're going through a phase where we're not really sure we can do much." You know?

So I thought - I think that's very interesting. I think the problem is very nuanced and very complex, and I think it speaks to the study that you mentioned earlier, which was the study that came from the Mongan Institute of Health Policy at Mass General, which is that because this is so difficult, particularly at the moment, it is incredibly difficult.

And when you think of - you know, when you put yourself in a patient's position, you know, as a health care provider - I mean, they are coming to the hospital. This is not a familiar environment. You know, suddenly they or their family members are being asked to make decisions about machines that are scary.

Really, the best thing that we can do for one another is to begin to talk about this long before this ever becomes an issue, to talk about it when we're all well, when we're in the office, when - before it comes up so that - so for instance for the caregiver, the provider, to ask the patient, well, if I have news that is potentially devastating, if I have news about a terminal diagnosis, if I have news about a mass on your X-ray someday or about a family member, you know, who won't be doing well, how do you want me to talk about that with you?

And I think for the patient and/or - or their family members, I think it's really important to think through that and to be honest with the provider. Like, I don't want you to walk around the issue. I want you to just tell me. I want - or I want you to tell me, and I want you to provide me with certain studies because I want that, or I want you to talk to my sister first and then talk to me or my husband or my wife.

I think it's really incredibly important to have those conversations because at the moment, it is really hard for everyone.

CONAN: We want to hear from doctors today about those conversations, and Mark(ph) is on the line calling us from Chicago.

MARK: Yeah, hi, Neal. Thanks for taking my call. Yeah, this has been on my mind all day. I read that resident's letter in the New York Times, it was yesterday. And all the comments that follow that letter I thought were so insightful. I was impressed. And one of the things that impressed me the most was expecting us to be able to come up with a prognosis with such accuracy that we can actually be honest.

Sometimes the most honest thing we can say is that we're uncertain or at best put things in terms of, like, 50-50. I mean, perhaps I had a very difficult situation just within the past couple weeks with a patient that was going to have a very difficult problem and, you know, because it's just so fresh, I really don't want to say it. I'm certain I could be identified to this family.

But the thing is, it's a very difficult problem. I placed the prognosis at 50-50, and I think the patient did very well. But in retrospect now, I think the family is a bit upset that I placed it so low and made them upset. But in the meanwhile, I thought that the uncertainty of the situation warranted such.

Ultimately, we really don't know these numbers, so we're just doing our best to make it realistic and give them something to understand. I'm interested in hearing what your thoughts are.

CONAN: Dr. Chen?

CHEN: Yeah Mark, that is such a really - it's so on-point. There was an interesting study, and Mark, I don't know if you saw this, you probably did, about a year ago in the New England Journal of Medicine. And they looked - they asked patients who had metastatic cancer, either lung cancer or colon cancer, who were receiving chemotherapy, to talk about what they - how possible they thought they would be cured, you know, what was the curative possibility. And what was interesting, what they found...

CONAN: And very quickly please.

CHEN: Oh, OK, was that patients who wanted their doctors to...

CONAN: Oh, we're going to have to find out about that when we come back from a short break. This is NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. A doctor with a dying patient has a significant dilemma, well at least one: how to talk to the patient and to the patient's family about the end of life. Just before the break we were talking with Mark, a caller in Chicago - also a surgeon - and with our guest, Dr. Pauline Chen, who was describing a study that asked patients with metastatic cancer what they wanted to hear. Dr. Chen, you wanted to finish that?

CHEN: Yeah, no, I thought the study was interesting because that patients, there was a tendency among the patients in the study to believe that doctors who were more optimistic about the curative effects of the chemotherapy, they considered those doctors better communicators, even though the curative effects of the - the chemotherapy was not meant to be curative.

So I think doctors are sort of between a rock and a hard place because they may be perceived as bad communicators, or their patients may be less satisfied if they are fairly blunt, I suppose. I mean, there's - I thought it was an interesting study.

CONAN: Mark, thanks very much for that phone call, appreciate it.

MARK: Thank you.

CONAN: Physicians, tell us about a time when you sat down and had the conversation with a patient or a family that helped shape future end-of-life talks, 800-989-8255. Email talk@npr.org. Dr. Pauline Chen is the author of "Final Exam" and the doctor and patient columnist for the New York Times. Joining us now is Dr. Beth Lown, medical director at the Schwartz Center for Compassionate Healthcare. She's also an associate professor at Harvard Medical School and an internist at Mount Auburn Hospital in Cambridge, Massachusetts. She joins us from member station WBUR in Boston. Dr. Lown, nice to have you with us today.

BETH LOWN: Thank you, I'm glad to be here.

CONAN: And no two patients are the same, but really is there any ethical choice?

LOWN: About telling the truth?

CONAN: Yeah.

LOWN: I don't think so, but I think what's so important is trying to understand who the patient is as a person and their context; their family, something about their social situation, their culture. Everybody has their own set of preferences about what they want to know, who should hear it and how it should be expressed.

And so trying to calibrate that before you begin is just absolutely critical.

CONAN: And can you tell us about an experience you may have had that entered one of those grayer zones?

LOWN: Well, you know, I was thinking about this, and really the stories that really haunt me sometimes are family meeting, speaking with families, particularly families that don't agree about what decisions should be made for a loved one who is unable to express their preferences, in which there is family conflict, difficult dynamics. But my own experience as a daughter haunts me still. I'll tell you this story briefly, but my father was diagnosed with cancer.

This is a number of years ago, but honestly, it still is hard for me to think about it. He died within six weeks of his diagnosis, and several things happened during that very brief period of time. I think it's hard for professional health care providers who either become ill themselves or have family members who become ill. In my case, I think I was caught a little bit in the middle of wanting to just be a daughter and not having to be vigilant about the care my dad was getting.

But there came a point where I asked him, Dad, do you really want us to continue with all this stuff we're doing, the radiation and everything else? And he said to me if you think it will help. And I knew it wasn't going to help. I knew that the burden on him and on the family to some extent but I was more concerned about him, was going to be greater than any possible help that could come from this sort of palliative maneuver.

CONAN: But did you tell him that?

LOWN: I couldn't tell him that. I simply could not tell him that, and I don't think anyone did, which was so hard. Now this - he had an oncologist who I worked with professionally, who I trusted, I respected, I cared for a great deal, but I felt that no one ever really told my father what was really happening and what he should expect. And then we went into the family meeting and had to make some decisions that we knew would be consonant with what he had expressed before, which was essentially that if he wasn't going to be able to think and interact with his family in any kind of cogent way, he didn't want to persist. And that's exactly what was happening.

But still the burden of that on the family is very, very great. So it's hard to be caught in the middle in this way, when you just want to be a loving daughter, and you don't want to have to be in charge of the care. I think a lot of family members feel this way. I don't think you have to be a physician to feel this way.

CONAN: Probably not. Let's get another caller in on the conversation. Dawn is on the line with us from St. Louis.

DAWN: Hi, thanks for having me on. I work as an in-patient nurse practitioner in cardiology, and we worked with a lot of pre-heart transplant patients, and we're using a newer technology, which is basically an artificial heart ALVAD. And it has been approved by the FDA for something called destination therapy, which basically means it doesn't have to bridge someone to a transplant or to explant, that you can just buy three or four more years, if a patient is lucky.

And I have found that it - that conversation that this is a palliative approach is often missed, or if a patient no longer is a transplant candidate, and this has become a comfort measure for the patient, that never gets explained. They keep hoping that we can solve all the complications and all the problems of end-stage heart failure such as renal failure and infection and bleeding.

And one patient in particular really changed my practice, and he was originally a transplant candidate, then wasn't, and ended up with multiple procedures and having to go in there when the physicians wouldn't and say we can't fix all of these problems. You know, this is it.

And I find the role of the nurse practitioner in my particular setting, we're often the ones bridging that gap, that the physicians are kind of evasive in that situation.

CONAN: Why do you think they're evasive, just because - they're not in denial. They accept that this is the end.

DAWN: Yeah, they - I think they get somewhat attached to the patients, but I think also is they keep thinking there's something more, surely there's something more we can offer this patient. And sometimes they just can't. And I think it's almost like a reflection of a failure of them, but it's not. It's the disease process. But I don't know. I wish I understood it because then I could move towards correcting it, but I don't understand it.

CONAN: Dr. Chen, that competitive spirit, we can beat this thing, is that a contributing factor?

CHEN: Oh I think it absolutely is. First of all, Dawn, bravo. I mean, I just, I think that the nurses and the nurse practitioners are just incredible, incredible patient caregivers and supporters of family and of the physicians, as well. I'm just speaking from personal experience.

But I think for doctors, and I can only speak, because I am a doctor, from my experience, but they're - you know, you go to medical school because you want to help people, and along the way in our training, we take on this idea that in order to help people, you have to cure them or that help is closely aligned with cure.

And in that light, death becomes sort of the ultimate failure. And I think for surgeons, you know, I - you know, speaking as a surgeon, you know, you - your hands are actually affecting the treatment. And so it becomes a very personal, as Dawn said, a very personal thing. What's interesting to me sometimes is you can talk to doctors of any specialty, but surgeons, because again, I'm a surgeon, I've talked to a lot of surgeons, but they will remember patients that they've care for that have died from decades earlier in exquisite details.

And they'll oftentimes follow their recollections with a sentence like this, like, you know, I think I could have taken out a centimeter more of the colon, and maybe the cancer wouldn't have metastasized. Or maybe I should have done something differently here. And those stories stay with them. So it's a profound - as Dawn said, it's considered, it's a profound sense of failure.

CONAN: Dawn, thanks very much for the call.

DAWN: Thanks for having me.

CONAN: Here's an email we have from Leetha(ph): My mother had a glioblastoma, stage 4, and her doctors did not tell her it was terminal or fatal until at least six months into the disease; she only lived nine months after the diagnosis. She was in serious denial about her extremely fast and fatal disease, and so was her husband. The only reason her family knew was because of Wikipedia and other Internet research. Her illness gave me an entirely new and negative view of doctors. I asked her radiation doctor point-blank about her chances, and he skirted the issue, giving her a way too positive outlook. She therefore was completely unprepared for the reality of her situation and was never given any quality of life options. Instead, she spent months doing chemo and radiation that made her life quality much lower. She had so many doctors, and they were never around or truthful. I would never return to that hospital located in Baltimore, which was also a teaching hospital.

And I wonder, as - we'll go back to Dr. Beth Lown. Patients do their own research. They do look at Wikipedia and WebMD and investigate their own conditions these days.

LOWN: They absolutely do, and I think, you know, in some cases it's a help. You want people to be engaged, to be informed, to participate in decisions, but it's very hard because some of the information out there isn't all that good.

CONAN: Here's another email. This is from Sarah(ph) in Westminster, Colorado: My father was diagnosed with terminal brain cancer. All but one of his doctors told us he had a chance to live when there was no chance of survival given the location and the type of tumor. The first doctor that gave us the diagnosis was very honest and compassionate. I am forever grateful to him for his honesty as it helped us as a family appreciate our time with my dad rather than waste time on misplaced hope.

That's another factor, Dr. Lown, as well. It's the - the false hopes can lead to, well, not just wasted time, but procedures that are unnecessary and expensive.

LOWN: Well, that is true. I mean, I think - there are so many reasons why it's hard to be truthful, to be honest, to discuss prognosis, and Pauline has mentioned some of these already. I think - you know, I'm - from a primary care point of view, our relationships is often what gives meaning to our work, our long-term connections with patients.

But it makes it a whole lot harder to share difficult news with them because we have feelings too. We don't want to tell someone something that we think is going to hurt them or that might become a self-fulfilling prophecy. We know from research that physicians are afraid of this, that somehow they'll tell - if they tell somebody that they have a poor prognosis, then they'll actually fulfill that and die earlier than expected.

And I think, you know, the - I totally agree with what Pauline said, that, you know, with the push of technology A, patients feel that just about anything can be done, and physicians - especially, I think, physicians who do procedures - tend to view any kind of - well, they tend to view death, I think, you're right, Pauline, as a failure.

So I think our emotions get in the way. The difficulty of actually formulating a prognosis really gets in the way, especially if you have an older patient with multiple chronic conditions that might interact in different ways, not cancer, but just, I mean, what is so prevalent: heart failure, diabetes, all kinds of other...

CHEN: Right.

LOWN: ...diseases. You know, it makes it almost - you know, it's just so difficult to predict. So I think, you know, we need to just acknowledge how hard this is on both sides of the relationship, for patients, families and for clinicians as well.

CONAN: Dr. Beth Lown, an internist, is associate professor of medicine at Harvard Medical School, medical director at The Schwartz Center for Compassionate Healthcare. Pauline is - Pauline Chen, a surgeon, who writes the "Doctor and Patient" column for The New York Times, author of "Final Exam: A Surgeon's Reflections of Mortality." You're listening to TALK OF THE NATION from NPR News.

And let's get Michael(ph) on the line. Michael is with us from Iowa City.

MICHAEL: Hello.

CONAN: Hi, Michael. Go ahead, please.

MICHAEL: Thank you for having me on the line. I think this is an incredibly important topic, and I think it's wonderful that you're taking the time and have the guests that you have on, with the kinds of insight that they have, to discuss this.

I'm a primary care physician myself, and I've been doing this job for more than 20 years, and I've seen a lot of patients come and go. And - but when I was in medical school, I had an experience that was really somewhat formative in which my grandmother came back, saying, well, the doctor tells me that I have a minor recurrence of my breast cancer, and it's nothing major.

And at that time, you know, many years ago when we didn't have the - even the treatments that we have now, that, you know, that just didn't exist. Her prognosis was grim, and the doctor was not telling her. So I accompanied her to a - to one of her doctor visits, to her next visit, and sure enough, he came in and just blatantly lied to her face. And that gave me a lot of insight into how badly this can go. After...

CONAN: Mm-hmm. Did you talk to him separately?

MICHAEL: I did. I waited until we were alone, and I said, you know, why would you do that? And he said, well, you know, why would I take away her hope? And my feeling at that time was, you know, why would you deprive her of the chance to have a realistic hope? And, you know, my experience since then has certainly borne that out. But physicians need...

CONAN: I have to ask: Did you say...

MICHAEL: Yeah.

CONAN: ...he's excessively optimistic to the patient? Did you say, tell her the truth?

MICHAEL: To my grandmother? Yes, I did, in the long run. It was a difficult thing for me to know because, at that time, you know, I've never really taken care of a patient on my own. I was in the stages of learning medicine, but, you know, patient care hadn't really come up yet. And so I wasn't sure if it was the right thing to do or not to do. But, yes, eventually I said, you know, grandmother...

(LAUGHTER)

MICHAEL: ...you know, he smiles and says, this is not nothing. This is just minor. We're going to do a little radiation here, but that's just cosmetic, you know, things like that and not of that is true. And surprisingly, my grandmother was smart enough to have just sort of seen through it. She knew that and her attitude about it was much better than I had feared. But she realized too that, you know, she needed to make some adjustments in her life and make some preparations and things like that that she had been sort of avoiding because she really wanted to cling to this, you know, false hope. The doctor said so, so it had to be so.

CONAN: Michael, I know that's a difficult story but thank you for sharing it.

MICHAEL: No problem. That's been, like I say, many years ago. And it really taught me a lot about how to deal with my own patients.

CONAN: Michael, thanks very much...

MICHAEL: It's just something.

CHEN: Wow.

MICHAEL: Thank you.

CONAN: I'm afraid we're out of time. Dr. Chen, thank you so much for your time today.

CHEN: Thank you.

CONAN: Dr. Chen on the line with us from Marce in France, and Dr. Beth Lown joins us from member station WBUR in Boston. Thank you for your time today. We appreciate it.

LOWN: Thank you for inviting me.

CONAN: Coming up next, we'll be talking about high-tech exploration and the discovery of a lost city in the jungle. This is NPR News. Transcript provided by NPR, Copyright NPR.